My Husband, My Life, My Love, My Family, My Cancer
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Sondra So sorry that it had to come to this. Pathetic that you had to have a meltdown to get them to FINALLY pay attention! Wrapping you in a big hug, we all get to that point sometimes. I hope you enjoyed every bit of that pizza!
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Happy belated birthday to mae and intolight!
Mel the venue sounds great and I'm sure your mother would be very proud and absolutely love it. I'm glad it's bringing you some peace.
I'm doing better. I ended up in the ER again on the 14th and was admitted overnight. As luck would have it my oncologist was the oncologist for the hospital that week so I got to have a good discussion with him. He is not opposed to a Pleurex now like the interventional radiologist was. His only concern was infection if it needed to stay in for a while but the hope is that Enhertu will start working and these pleural effusions will start filling less frequently. He gave me the option of placing the catheter but also said we could do scheduled thoracentesis appointments on an outpatient basis. I decided to go that route for the moment. My breathing is better as I had accumulated 1.5L on the left and 1.6L on the right. Mainly what I am contending with right now is lack of endurance when being up and around and a lot of fatigue. I am waiting for the schedule still but will follow up with him in a few weeks and see what we think about it at that point. Since I would have to have a catheter on each side I was concerned with discomfort and sleep disruption.
I had a couple of friends take me to the coast this weekend and they even found a wheelchair to push me around in. I was able to walk down on the beach a little ways but I wore out quickly. Still, it was a great day and I loved being back by the ocean.
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Emac - so glad to hear that you are feeling better and have some sort of catheter plan in the works. So great that you got to the beach. There is nothing like the Oregon coast to boost a person spirits.
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Hello everyone. Going down to 40 tonight. Next county over has a frost warning. Happy it's not us, so that way I do not need to wheel in the plant cart and carry the rest inside. I am in horrible pain (9) across my chest but primarily right side at the mastectomy line and under the under arm area. It feels like a knife cutting thru my chest to my shoulder. I've tried lymp massage repeatedly using lidocaine mixture. I put on three types of support tops till I found one semi-comfortable. . Not a clue what this is all about. Maybe I overdid it house cleaning. Or it could be MS hug. Not the kind you want to get.
sondraf, You are a human and you hurt and the team that's suppose to be helping is not. Let 'em have it. Maybe someone will learn more compassion and better nursing or doctoring. I'm sorry it is at your expense. emac, I'm so glad you have a doctor that's willing to work on draining. Yes infection is a risk, but I've been told slight risk and my former MO said he had a patient with a drain well over a year with no problem. I found the thoroscentisis (spelling?) to be more painful. But with two drains I can see the concern for quality of life. But it sure is nice to breathe! Keep fighting the good fight and the next treatment will do the job!
In pockets for all your needs and hope everyone gets good sleep and a better day tomorrow.
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Thanks everyone - I figured you guys would get it more than anyone :) @Micmel - I was thinking about your post from a few weeks ago when they were finally giving me my injection. Our time away from the medical machine is precious, to make any changes and upset the balance causes a lot of stress and is to be avoided if possible. I really wish this was better understood. Or I wish there were more instances of support groups or listening sessions or something for women who have been at MBC for a while (and there are growing numbers of us!) and hearing our concerns and maybe finding new ways or approaches to lessen medical management if its not absolutely necessary at the time. Wishful thinking perhaps.
Unfortunately I checked my upcoming appointments and Im now scheduled to see normal onc every other month so before jumping to conclusions/anger I need to find out if this is scheduling being idiots or a policy change or what, but that is for tomorrow along with anything else to do with the H, including talking to my nurse - just need a day to cool off. Today is hip focus only.
I got my jammies and my pizza (@eleanora - I just re-read that lol, I meant jammies that are a set, instead of tshirt and random pants), along with some nice new soaps and a supportive log-shaped bean bag pillow that I can hug, stuff under my legs, support my back, etc. Thanks email marketing and 3 am phone shopping! So some things in the mail to look forward to. I may go to a Stage IV support group on Monday (at a special location, not hospital), its not something Im keen on but itll pre-empt the whole psychological support discussion and we have other reasons to be in the area and can get lunch after. Like everything else, Im willing to give it a try with an open mind, at least once.
Ok, enough about my drama, I hope everyone has a good day where they are and if that is near a beach, a REALLY great day :)
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I thought that's what you meant 😂 but the mental image of pj's covered in my favorite food was enticing. Even now, I am sitting here in my random T-shirt and pants, drinking coffee and posting.
Will be interested to hear what you think of the off-site support group. My MO and her NP keep pressing for me to use their institution's services, but in the US, everything a patient says is entered into a computer system that can be accessed by dozens of employees. There is no doctor-patient confidentiality anymore. What happens in my mind is the last bit of privacy and dignity this disease has left me, and I refuse to yield it to the medical establishment.
Glad to hear that you are feeling better.
Eleanora
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emac So glad you have have relief now and also a plan from your MO. It sounds like a good plan and definitely a more comfortable one! Happy to hear you got to the coast with friends. To me the beach is certainly a perfect healing space for my mind and soul.
sondra Good idea to step back take a moment get a plan together to set yourself up for good support from ladies who get it! Wishing you a better week.
irish Geez how weird is that pain, hope you have some relief today. Hopefully you're right and possibly from overdoing it.
Status quo here, looking forward to a walk today in the sunshine. Hi to all and wishing you a peaceful day.
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Sondra - let them have it! It amazes me that people who work in the cancer field, including MOs, can be such idiots sometimes. Thank God I have never had to deal with those type of careless people.
Emac - of course you’re fatigued! Even the smallest things can make us tired and you’ve had multiple procedures in a short amount of time. Be kind to yourself and rest.
The sun is out this morning and my prayer is that it will shine on each and every one of you, taking your pain away.☀️☀️☀️☀️☀️0 -
Looks like a nice day today, temps warming up so any snow we got will be gone which is fine with me. Nothing but breaking down cardboard is on the agenda. I don't mind the bathtub set up with the portable wash/spin machine and the Panda as well, tried after spinning with the littler spinner and not much came out but that is fine. I also like the extra room that not keeping the Panda in my bedroom gives me. Also, if anyone wonders why the hospital baths daily, I slipped when standing up from my shower chair. Caught myself that time but decided that even with a shower chair, just not safe. I am just as clean washing while sitting and clothes are always clean and bidets work wonders.
Planning more lentils today, eggs will feature and need something like a pasta or another thing. Day is mostly consisting of breaking down boxes to add to recycle pile. Also saw a thing on youtube about making a pizza crust out of canned chicken which looked pretty darn good so will be looking into that as well. Pizza sounds good and controlling what the crust is make out of sounds good to me.
Hope everyone has a good day and in pockets for those who need it.
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Sondraf - Like Eleanora, I am sitting here in a pair of pajama pants with a random sleep shirt, sipping coffee and posting. What I want to add here is how your experience with the medical people underscores just how much I believe that most of us only get "treatment" these days, and not "care". It seems like in your case even getting "treatment" only was a bust. There is so much need for reform in the medical field.
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Boy it's hard to wade through this site redesign YUCK. Anyway, I found you!
Micmel I just got your PM from 6 months ago!!
lots of love to the ladies on this thread!!
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Sondraf, adding my support for you in having to deal with providers who don't listen and who condescend... doofus-heads, is what I call them. Pizza and pajamas forever! Hope you get some actual support from your medical team soon.
Emac, how lovely that you got to the beach with friends. When are you starting Enhertu? You may have already started it, forgive my memory!
I do attend a local (virtual) MBC support group, but it isn't through my medical center. My medical center only has a support group for "all" breast cancer patients, and you can imagine the Darth Vader theme from Star Wars playing if I walked in there - the scary Stage 4 patient!! They don't encourage MBC folks to attend, actually discouraged me when I reached out to them. So I found one at another medical center that doesn't document anything about me, the group facilitator has my name and contact info but nothing goes into any kind of chart. I like the privacy of the group and have made a couple of friends that I text with and have talked on the phone with.
Three weeks and one day out from spine surgery, everything is getting a little bit easier, and my Mum is flying home today. I couldn't have had the surgery without her staying with me for these past weeks, I'm certain I'll start crying after she leaves.
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SF cakes, stage 4 is not always scary, more of us are lasting longer, I am at 9 years since cancer was first found. MO says was always Stage 4 even though it was too small to detect in the brain. Some of us are doing just fine overall and early stagers should hear this from Stage 4 and treatments are better. Some people may be lucky enough that the cancer does not come back but you never know. Groups need to welcome Stage 4 discussion as well. I am very glad you are doing so well after surgery, still in your pocket as you recover.
Emac, glad you got out with friends, so important to have support with dealing with stuff.
I made a pretty good breakfast. Took 1/2 cup beefless ground, added bacon bits and shredded cheese, mixed together, added garlic seasoning and a combo seasoning, mixed up again. They were all put on a plate with a silicone lid on top and heated 2.5 minutes. The ground and everything else fused together making a chewy sort of texture, I added a spoonful of mayo and combined, was really enjoyable. Going to look up microwave recipes as well in case I need a quick meal.
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I agree that stage 4 is not always scary. And it is important for other BC patients to understand this. As well as understanding the statistics for developing stage 4. And to be educated to not ignore symptoms that could be indicative of stage 4.
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I agree with you both about Stage 4 not always being scary, but I wanted to join a group where I could get support, not have to be the lone stage 4 patient educating all the earlier stage folks. It didn't seem like they wanted me there, anyway.
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There are so many comments, I know I'm going to miss something…
Sondra, I think we should ALL march into your hospital and raise hell! That would be fun!
mara, I saw something on a FB feed about making patties with canned chicken, shredded cheese, an egg and some ranch seasoning. The guy formed the mixture into patties, then baked them into crispy cakes. They looked good and I will probably try to make them.
We're meeting (via phone) with the insurance woman to get signed up for our Part B supplements. Yay!
I spent over an hour on the phone with my sister yesterday. We went over my latest blog and made some tweaks that cleaned it up at bit. I'll try to get it published this afternoon. She's taking a class on writing and editing (she's taught a class in copy editing in the past) and so I sent her a bunch of early iterations of my published blog posts. She has an assignment to find and article and do "light" edits and "heavy" edits. She had to send me a form to sign in order for her to use them, but I'm OK with that.
My rib pain is much better, so I'm thinking I pulled a muscle rather than fracture a rib. I'll keep an eye on it. Am due for my next PET scan at the end of March, but if it's still hurting, maybe I'll get a check x-ray to see if I did fracture anything.
Not much else going on. It's raining here again. Weird weather for San Diego…
In anyone's pocket who needs it. I also have Kleenex, chocolate and wine for anyone who needs that. Actually, I'm out of wine, but will send DH to the store if necessary.
Love to all,
Carol
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sf-cakes, I hear you about the earlier stage folks. Sometimes, I don't want to comment on what they say, because I don't want them to worry about progression. Still, they (and we) need to be aware of what's going on in our bodies.
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Hello Santa~ good to see you back again I hope all is well. Glad you were finally able to find us. I know it can be tedious !
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I'm sorry that you felt unwelcome in that BC support group at your treatment center, @sf-cakes. If they don't want metastatic patients in that group, then they should make a separate group for the Stage IVs. It only makes sense. Why only support early stagers? It does seem to mimic the sense one gets from the medical field that the focus is primarily curative and once that is out the window, one becomes less of a concern. Of course this isn't true for all medical professionals, there are great MOs out there that deeply care about their patients but it is the feeling one gets. I'm glad that you found a separate support group that was a good fit though!
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Well, this is embarrassing! I've started taking Truqap and apparently have been taking half doses. I'm supposed to take TWO pills each morning and evening and I've been taking ONE. I thought I was getting off easy with the lack of SEs. Just messaged my MO and will up my dose tonight. Sheesh!
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Sfcakes~so glad you’re doing better. I had to smile at your darth Vader music comment. lol. It’s so sad but true. We do scare some that aren’t stage 4. Geeze i. scare myself. You’re so lucky to have your mom there. I would give anything to be with mine again. Give her a big hug!
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Thank you, mods ❤️ I'm so glad that I found my local group, too!
Sunshine, lol, here's hoping the proper dose may still not give you any side effects.
Mel, sending love and a big hug for you. It's so hard losing the people who mean the most to us.
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@sunshine99 I did that with my first course of Lynparza for like three weeks. Then I happened to reread the box one morning and felt like the worlds biggest idiot. Somehow the phrase 'two tablets twice a day' is confusing to the brain - I think there needs to be a comma between tablets and twice lol. At least you noticed quickly!
@sf-cakes Sounds like you are trucking along on a really solid healing path with few complications after such a big surgery! That support group approach seems rather short sighted, like we should be shut in a closet lest we scare others. Surprised its like that considering you are in a rather more open minded area of the country!
My soap arrived overnight so now the house smells nice and Im looking forward to my shower this afternoon. Todays purchase - body pillow. I can't keep formulating new shapes with two or three normal pillows, need something body length to prop myself at a side angle to get some pressure off the si joint as I can't roll on my sides. Support group was booked out, guess Ill try for the next one or see if the other support center that is much closer has some options. There just aren't the resources here for the amount of people dealing with cancer at the moment, not enough scanners, doctors, nurses, beds, anything. Hence the treatment rather than care approach.
Pain doc this afternoon at 4, we'll see what he has to say. Until then its oxy and ice packs.
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Sondra~hope the pain doctor does some needed magic. I also hope the body pillow gives you relief. It’s all so frustrating to deal with. Everyday I wake up counting off till the next appointment on the horizon. It never ends
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Mel, whats the status on your doctor after that last meeting? Have you found one you can work with?
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I’m going to scan because it’s time. After I scan in March. I will research some new ones. I don’t really like her very much. I felt dismissed and not listened to at all. So as of now she is my onc. Until I find another one. Problem is there are only so many at one hospital. I will see how she responds this time. My other onc always drew tumor markers. This one doesn’t. I look at them as a gage. For my mental peace. The whole thing sucks. Thanks for asking.
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I am getting Herceptin today, Paratransit picking up and probably have them drop me off, will need to pick up bus tickets soon. Breakfast is going to be rice initially boiled with garlic and taco just to give flavour and two eggs.
Hope everyone has a good day, in pockets for those needing it.
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Be safe Mara~ hope you’re ok after.
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@goldensrbest I’m so glad you got you insurance copay issues resolved. That elieves a lot of stress💜
@emac877 hoping you get good results with your pulmonologist and the possibility of being seen at th large cancer center. It makes all the difference for me. Going to the John Theurer Cancer Centerat Hackensack University Medical in North Jersey.It’s a relief to know you have an Onc who works with a team of other doctors for whatever arises. It’s an hour and half drive up from the Nw Jersy Shore and a long day but worth the care and peace of mind. If you see an Oncologist at the cancer center he may give you a chemo cocktail specific to your needs based on your labs. And liquid blood. Tests. 🙏
@sunshine99 Carol, enjoy the sunshine in the desseert today. Sorry about your rib pain, I get it it regularly. I know your pain🩵
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Thank you mel, the trip there and back were fine, now I am famished even though I had rice and taco seasoning and two eggs mixed in. I saved enough survey money, will just get a junior chicken and double cheese burger from Mcdonalds. Worst part was navigating ice on the front step but it was gone after so someone must have put salt on it which was fine.
I hope you are doing better today and as far as anything else, planning to insist to myself that if I feel sleepy, put myself to bed instead of watching other stuff. I need more than 5 hours. I feel more unsteady with less sleep.
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